The J's: CHOP Will Be Home

Making the choice to switch Jackson to CHOP was quite stressful. But I am confidant that it was the right choice. Now I need to work up the nerve to tell his Drs at Geisinger. Our appts were in King Of Prussia... Only 1 hour away. Jack even got to watch a movie during his ultra sound... Where we learned that his left kidney is actually TWO kidneys "a duplicate kidney" (nothing to worry about though!). Though we're not sure how no one has ever mentioned this in the 30 ultrasounds we've had!

"Stinkin Kidneys!"

Our entertainment for the day... his collection of sharks.

Dr. Shukla believes that his bladder is to blame for his acute issues. He'll take him to the OR in the next few weeks to do a cystoscope, check for reflux, get a good look at the bladder, and place a suprapubic catheter (a tube coming through his abd that will drain his urine from his bladder, see pic)

This will stay in place 7-10 days to let his bladder relax and see if there is any improvement in the hydroureternephrosis. After the 7-10 days, A Mag3 scan and Urodynamic test will be done. The tube will be used in the Urodynamic test to fill his bladder, and then will hopefully be able to be removed.

Dr Kaplan explained that after all the calculations, Jackson's kidneys only have 56% function left in them... STINKS!!! He is in stage 3 of the 5 stages of Kidney Disease. The right kidney no longer shows any sort if mass on it. Both kidneys are smaller than they should be, and their increased echogenicity shows that the tissue is damaged. He has ordered a bunch a blood work to be done within the next month. He will email me this week with a recap of our 90 minute appt so that I can email him directly whenever there is a question or concern. He told us to not stress over Jack's eating (or lack there of) and to let Jack control the situation. We don't have to push fluids, just provide water on command. Ok! One less thing to worry about. After his physical assessment, he agrees that Jack does have "Pseudo" Prune Belly Syndrome. His summary is
"I do not have a good explanation for the history of frequent UTIs.

I suspect that his kidney function will improve in the short term and decline in the long term.

I explained that we only start talking about dialysis/transplant when/if the estimated glomerular filtration rate decreases under 30 ml/min.

Jackson's eGFR based on a serum creatinine of 0.7 mg/dl is 56 ml/min.

This is Stage 3A CKD."

Jack was truly an angel for most of the day. I'm excited to get these tests done and start "making progress." Jason is the exact opposite of excited, but knows that it needs to be done. I explained to the girls what to expect the next few weeks... They asked a lot of questions... NONE having to do with how it would all impact there vacation plans! Nan held down the fort while I was gone and made us a delicious dinner... I haven't pigged out like that in quite a while! I've started a medication called Buspar a few days ago, to help me get some sort of sleep... It's been a whole month of tossing a turning. At times I feel sorry for myself, and my family. Other times I am at peace with things. Some days I ams o thankful for the time that I've had with him. Others I am so angry that he may be taken from me. I'm completely overwhelmed, yet mange to keep running the house and enjoying life. Some days I'm Super Woman, others I feel like a witch. Some days I'm a totally awful person and think things like "is it worth it?" "Would I do it all again if I knew it would be like this?" "Did we mess up and should have stopped after our two healthy girls?" I'm only human... But then we get a day of relaxing together and being a family and having fun and I know that all is right in our world. Besides, after our pouring rain drive home, God gave us this rainbow... and lots of water puddles to play in.